Thyroid Cancer – A Survivors Perspective

Craftsy

For all of you that don’t know, September is thyroid cancer awareness month.  I thought I’d kick off the month with some thyroid knowledge, since I am a thyroid cancer survivor.  Hopefully this will help raise awareness of this so-called “good (yeah right!) cancer”.

What is a thyroid?

Some of you may know what the thyroid does, but some don’t.  This info-graphic from the Hormone Health Network of The Endocrine Society will give you a little insight.ThyroidlowresENPg1

As you can see, the thyroid is very important.  The hormones it produces are vital to one’s survival.  There are many people who experience problems with their thyroid and it can wreak havoc on your body if not treated properly.  Without the thyroid hormone replacement I take daily, everything in my body would slowly shut down, I would slip into a coma, and die.  I’m not trying to be morbid, but those are the facts.

help

Irregular thyroid function affects everyone differently, so if you know someone who has thyroid issues of any kind, please give them a hug.  That could be just what they need to make it through the day.  My husband is an excellent hugger and that always makes me feel better!

Thyroid Cancer – Not so Good

Thyroid Cancer is the “good” cancer.  This is something I’ve seen in more than one place and it makes me angry.  Let’s look at the definition of cancer:

“the disease caused by an uncontrolled division of abnormal cells in a part of the body”

Does anything about that sound good?  Thyroid cancer gets that reputation because, for the most part, it’s highly curable.  People deal with a lifetime of change and there are those that die from it.  Take a look at this info-graphic for some more knowledge about the different types and treatments.  I had follicular, by the way.

Thyroid_Cancer_Sheet_FINAL2

Here are some things you get to experience when you have thyroid cancer:

  • Biopsy – I had a regular biopsy, not a fine needle one.  Having a needle jabbed into your neck repeatedly is always fun!  Can you feel the sarcasm?
  • Removal of the thyroid – I personally had two surgeries within two weeks of each other.  Some people need a neck dissection because it’s invaded lymph nodes.
  • Low iodine diet – this is to prepare your body for the RAI treatment.  Since the thyroid absorbs most of the iodine you ingest, this leaves any thyroid cells left over starving for iodine so your uptake of RAI is better.
  • Thyrogen shots – if you’re lucky.  When you’re preparing for treatment, you have to stop taking thyroid hormone replacement to raise your TSH.  These shots keep you from having to do that, but most insurances won’t pay for it.  They cost about $1,200 each and usually you need 2.
  • Radioactive Iodine (RAI) treatment – I took a pill and had to quarantine myself, in my home, for 3 days.  If you have small children or a higher dosage, it could be up to 7 days.  Some hospitals have special rooms to stay in.  Mine did not.  
  • Whole Body scan –  this takes 30 minutes to an hour.  They scan you from head to toe to see if the cancer has spread.  This is also done alone.
  • Suppression of TSH (thyroid stimulating hormone) – this is a life long thing.  The degree to which the hormone is depressed depends on the kind of cancer you had.
  • Find an endocrinologist – this is the kind of doctor you see when you have thyroid cancer.  They are specialists and when you live in a rural area, hard to come by.  I waited for 3 months after my surgery to see one for the first time.

Now, these are just some of the things I experienced.  If you have a type of thyroid cancer that is more aggressive, there will also be chemotherapy and maybe radiation therapy.  There’s also the chance that your parathyroids get damaged.  These control your calcium levels.  Some people have damaged vocal cords after the surgery.  None of this is “good”.

Living Without a Thyroid

I have to depend on thyroid replacement hormone for the rest of my life.  This is a constantly fluctuating thing that requires me to visit the endocrinologist at least twice a year for a blood draw.  If things are off, every 3 months until it’s right.  My insurance only wants to pay for the name brand medicine they choose.  Changing medicines requires more blood work and it may not work for me, so I pay for it out-of-pocket.  You must ingest the medicine on an empty stomach and wait an hour before eating.  Taking the medicine at the same time everyday helps prevent fluctuations.  Certain foods or vitamins must not be consumed within 4 hours of taking the medicine because that can affect it too.

I never know what to expect from day-to-day.  Any fluctuations in other hormones seem to affect how I feel, since my thyroid hormone is “manually” regulated.  I get moody, tired, jittery, achy, etc.  It definitely keeps me on my toes!  I will be posting more about my personal thyroid cancer journey some time this month.  Just wanted more people to be aware of what really happens when you go through thyroid cancer.

FBawareness1

I am very lucky to have a family that has supported me through my journey.  It hasn’t been easy and I greatly appreciate all they have done to help me through it!  I read many forums for people who have experienced thyroid disease in one way or the other.  It’s sad to me that a great many people are lacking in support because their loved ones do not understand, nor try to.  Since the thyroid is such an important part of the body it affects every aspect of your life.  Please be informed of what people are actually experiencing before giving out unsolicited advice.  Sometimes, a hug and listening ear is all that’s needed.

Please help spread the word about thyroid cancer.  The rate of diagnosis is growing rapidly among men and women.  Let’s give the support needed to help reduce the numbers!  I have a tab in the menu above with more resources for thyroid cancer.  I will be adding to this along the month.  Feel free to share your story in the comments below or on any post under the thyroid cancer menu.

Y’all have a great extended weekend and I’ll see you back here on Wednesday because I’m taking Monday off!

 

Leave a Reply